Saturday, January 2, 2010

CCSVI....(cue the music)

CCSVI, No, NOT is not a new crime show on the TV. It is a medical problem I have been looking into recently that may be a root cause or source of problems for MS sufferers. There is a study going on in Buffalo, NY, that I have signed myself up for in the hopes of looking further into the problem of venous narrowing in the drainage to/from the brain and if there is any possibility that this could be part of the MS experience I am having. I have suffered with migraines that have no source for so long, that who knows, maybe just maybe this could be "IT". I sent my vascular surgeon a message and some info on CCSVI asking him to look into this and see if he would be interested in testing or helping look into this further. He told me he would look into it some more but I have not heard anything back from him yet. Every day there is more and more in the news about the research and possibilities and it looks promising - this could change the whole MS world. I do not think "pharma" world is ready for that.....whatever would the money hounds do? I mean IVIG treatment are 100K a year my insurance is paying, and the shots are 30K....not to mention all the doctors who get money from the frequent visits. WOW!

In the meanwhile I am also waiting on another series of bloodwork results. After seeing the hematologist, he suggested that I had been exposed to Hep B. I have never had any Hepatitis serology done that I know of, so this was news to me. He did not ask if I had ever been vaccinated for it, which I had been, back in the days of being a nurses aide....years ago. So I went in to see my GP, Dr. V, as he is more familiar with my history of low WBC and things of late and I wanted him to see this latest bloodwork series. He decided to run another series as part of what he would look at was missing from the hematologist and he did not think there was enough info there to make a diagnosis of infection. I am still waiting on the results from that. He said it could take a couple weeks to receive that info. He aslo said he would not worry about the ANA titers and that the levels were not that high to cause worry to him.

I have taken myself off Betaseron for a few weeks to see if it may be a main cause of the WBC being low. One of its side effects is "possibly" lowering the WBC. So, I decided I would stop the shots for a few weeks and let my system clear out and see if that made any difference in my bloodwork. I have been off the shots for about 3 weeks and when I did my last bloodwork it had been about 2 weeks. It will be interesting to see if there is any change......I would love to not take a shot every other day again, but not because it is causing my body problems. I would rather it be due to a cure from the CCSVI or something like that! :)

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